Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

looking forward I think your plans sound wonderful! Linda is our resident Disney cruise expert, I'm sure she'll give you lots of great info. My 10th cancerversary is coming up in Dec. too. I'm not sure yet how I'm going to mark that day...

I did not go through radiation, but I am sure it gets old and tired pretty quickly. I can totally relate to so much of what you wrote. I did not have a support group when I went through treatment. I know it seems odd, since I formed one years later. I did not want to do anything but focus on what I needed to do for myself and my family. I wanted to spend the minimum on cancer. It had already taken too much from me. I guess that's the number one thing that keeps me from fretting too much over it, I can't let it steal any more from me. Worrying over it steals time in life you will never get back.

I have learned to adjust my level of involvement in the cancer world. What was right for me a few years ago does not work now. I have developed some deep lasting relationships that I will continue. The funny thing is, when I get together with my dear bc sistas, we barely talk about the beast...again, it steals, we won't give it more!

I know there have been many times over the years non-survivors say things that hit me the wrong way. I also know that I have said things the wrong way to other survivors myself. I'm a positive person, but I also hate cancer. There's nothing nice about it! My friend Mylette called it "The Poop (but the other word) Sandwich" She said it was like you are at a really nice cafe called the Life Cafe and you ordered this incredible meal, but when it arrived it wasn't what you ordered all. Instead, you got a poop sandwich. You couldn't send it back either, you just had to eat every last bite.

That's cancer. It's not cute, you can't tie it up in a pretty pink ribbon. It sucks. I think that it's ok not to go to bc events or groups if they don't meet you where you are. You know we are here, with our obsessive Disney therapy! That's the cure!

 

[snappy]

Laura, what a wonderful response to lookingforward's post. The poop sandwich analogy hits the nail on the head.

Lookingforward, I think there is no better way to celebrate you cancerversary than on a Disney cruise. Go for it!!! I hope that just planning it will get your mind off the radiation pain in the betuskie (why am I liking that word?) involved in treatment.

I too have been going to monthly support meetings less as I find little that pertains to my life now. I do enjoy being there for recently diagnosed women but can do that by phone or internet. I will say I was invited to a very special gathering, a high tea affair, to celebrate a 4 year cancerversary a few months ago at the honoree's home. She is a wonderful German lady whose husband does research at LSU. They travel internationally regularly and have a very eclectic group of friends to say the least. We did talk cancer a little but it was limited to celebratory stuff. It was much more fun to hear stories of the women's experiences who hail from Europe. Michaela (the honoree) is considering redoing her reconstruction as she was not that pleased with the original, so I did show her my surgeon's "work" on my chest. I continue to be amazed at the magic he created. I don't think I was one of his easiest cases due to the huge cavity he had to work with. He and I talked Disney during one of my procedures during which he told me I could be awake, he and his family favor AKL.

I am glad you mentioned the Village Green, Laura. Was that standard view? I need to call and put in my request for that location for my 6 days at BW during my October trip. I am not expecting too much as I think I hit the jackpot for this last trip. Does lighting strike twice?

We may have to meet up Sept 26 in the evening if hubby and I take an early enough flight, Laura. We don't have the flights yet, I booked one months ago for just me on Sept 30th but now need to make that one earlier and book his.

Now I am tempted to change my reservation from Yachtsman to Cali Grill for our anniversary meal on the 27th.

I actually took pictures of the snake in the grass sushi and the desserts. Would y'all like to see? I took a lot pictures during the trip, many were too blurry. I need to post some so I need to hop over to photobucket. I have yet to see all of DD17's photos's. I am anxious to see if she has some good ones.

Off to photobucket I go!!

You were right Laura, all of your and my recent lengthy posts are bound to attract his attention!!

 

[snappy]

OK ready or not . . . pictures for the foodies among us. . .

Here is snake in the grass from Cali Grill. . .

Here is one of the graduation dessert from Cali Grill. . .

 

[jackskellingtonsgirl]

I'm sure if we ever meet up we'll have a lot to talk about, having the same camera and all. BTW, will you please show him how to post pictures?

Poor oogieboogieman is a bit befuddled by the computer. He won't even load the photos from his memory card into the PC, let alone move them from PC to Photobucket for posting! We did load the editing software from the Olympus into the PC over the weekend so he has been playing with that. He hasn't let me load his memory cards in forever - no telling what all he has in there! Mostly the lake and the zoo, I think. He is still switching back and forth between the Sony & the Olympus - not sure which one he really prefers. He has more accessories for the Sony.
We would love to meet you guys! We have met several DISers over the years and it is always so much fun!

Laura - Due to the issues listed above, DH doesn't post on the food porn thread!
Your September trip sounds terrific!
We're in a club level room at AKL for the first 3 nights and a studio at AKV for the last 3 nights. (SSR and WL in the middle.) Hoping to get a 4th night in the studio - we're waitlisted.

Lookingforward - I haven't been there, but what you are saying makes sense to me. You are in my thoughts!
We've never done a cruise, but our friends who have been all had positive things to say! Have fun planning!

I need to take DS to school. 3 half days to go! He has his Science final today, then he has to go sit in the Band room. Their performance last week counted as their final, so I guess they will just hang out.

 

[snappy]

Other pictures. . .

Ah, the Boardwalk at last!!! Day photo. . .

Dusk picture. . .

All of us in line for Splash Mountain. . .

Arrival at Boardwalk. . . just chillin'

The graduates. . .

DH and DD12 on Toy Story Mania, the new video game ride at Hollywood Studios. . .

My favorite of DD12 and her friend. . .

ARGH!!!!! Enough said!!!

DD17, her BF, and yours truly at Cali Grill. . .

Fun on Kali River Rapids. . .

 

[Pea-n-Me]

lookingforward I think it just goes to show how individual coping styles are. I took part in "cancer things" while I was in treatment but there was just this incredible sadness about it somehow. I enjoyed connecting with others in the same boat but it was definitely a mixed bag. One thing always overshadowed everything and that was the feeling I had that I might die and leave my children without their mother. Not a good feeling at all. It still occasionally pokes it's head out, but fortunately not nearly as much now as it did back then.

One thing I've learned, however, is that you'd be surprised how many are in the same boat, or at least have been in it (or something similar) that you don't even realize. Speaking of your NP - I liked my NP a lot and I cried on her shoulder many times. She was great about my nutty emails. She once shared that her sister was a BC survivor. But I kind of thought the same thing, too - she can't really relate. Well in conversation last time I saw her (she's since left the practice), she mentioned BC in relation to herself, and low and behold, I discovered she was a Survivor also! I was kind of embarrassed I didn't know that, but somehow I didn't. So she did, after all, understand what I was feeling. My chemo nurse was also a BC Survivor and that made me feel comfortable with her.

In dealing with my heart failure patients, I can tell that sometimes they think the same thing about me. That here I am blabbing stuff to them that is just blah, blah, blah. What do I really know? If I share that I had breast cancer, they all of a sudden "soften", as in, wow, someone really does understand (obviously not the same thing exactly, but fairly similar in emotions with both being health crises). I made an assumption recently about a young couple in my care. Turns out one had had lifelong heart problems with many surgeries and the other had already survived lymphoma with chemo and the whole deal. They'd been through so much, yet you'd never know that by looking at them, especially given their ages. I've been on my job for over 20 years and I'm amazed at some of the storms I've seen staff weather themselves. So I do sometimes tell patients when they're feeling that we don't understand, that actually, sometimes we really do. We're all people with health problems of our own, and families, deaths, crises, etc. Sometimes if you delve into the background of why people went into healthcare, it was because they or their family members had illnesses of their own and it drew them into helping people.

Just some thoughts... sorry so long.

 

[Pea-n-Me]

Laurie, what beautiful photos! Love the snake in the grass (what exactly is it?) and the group photo in front of Splash especially (at least I think that's where you are??)! Could you speak about the crowd levels?

 

[jackskellingtonsgirl]

Laurie - Love the pics! Your DDs are beautiful! Everyone looks like they are having such a wonderful time.
I showed DS the sushi and asked him if he thought he might like it. HE's the one who keeps saying he likes sushi! He made a face like this and said he likes California rolls.

 

[Pea-n-Me]

Just a quick note about Disney cruises before I have to go to work.

I have a deluxe trip planned for December to the GF but now my daughter wants to do a disney cruise. The only disney cruise we went on was a four night that was cut to a three night due to a hurricane. We missed the private island (damaged by the storm) and we were obviously stressed from all the damage we knew we going to return to at our home. SO...I am considering the three night on Dec. 4th...which would put me at my one year post cancer anniversary (Mastectomy date 12/5) while on the high seas. Turns out it would actually be much cheaper than the GF deluxe. What do you all think?

Would you be doing a night or two at WDW also? You are so fortunate not to have to deal with AIRFARES!! I think the 3 night is really short. The 4 night is *almost* too short, too. So I would have to add on a few nights at WDW or Ron Jons or somewhere also. If you book it yourself you're free to stay wherever you want for however long you want. That's what I'd do. You should also look into the 7 night just for the heck of it. Not sure what type of room you prefer, but the prices can be very affordable if you pick an inside room (which you're not in very much anyway). You'll probably be much more relaxed this time around, and hopefully able to enjoy Castaway Cay. I understand what you mean about it being stressful - we were on Wonder right before Frances hit, in fact we "rescued" everyone off CC on our At Sea Day. We also had to cut the trip short by 3 nights when we were able to get on one of the last flights out. I was on the phone with SWA for what seemed like an eternity in our stateroom. Bummer (that was my post treatment trip in 04). And we didn't have a home to worry about. Have fun whatever you decide!

Enjoying hearing your trip planning, Laura. We have a Bounceback booked and also a cruise booked, but I think we're postponing both while we get some work done around the house. For once, I'm more excited about the house than the trips (though all we keep saying is, "we wish we were at WDW"). Merry, we can swap horror stories.

 

[Sha]

Great pics Laurie!!! I shouldve gotten myself those graduate mouse ears but I didnt... I talked myself out of them because I have a pair from Club 33 (eBay) and then a pair a friend brought me from DL for the 50th.

And I want to try the Snake in the grass.. LOL.. thanks! (and being I cant go for awhile .... )

 

[snappy]

Yep Linda the entire entourage picture was in front of splash (did you see my legends above each picture?)

I really like that one too.

Naturally, another guest took it, maybe why it came out good?????

Crowd levels, hmm, not so bad Thursday the 22nd, building a bit on Friday (Memorial Day weekend). It did rain a bit the first three days which cleared the parks but we linger through rain (we have web feet, heck we are from Louisiana!) The boardwalk was surprisingly quiet, the only nights it was hopping was Friday and Saturday Memorial Day weekend. The second full week was not bad as the Florida schools don't get out until later this week, Friday (May 30 was busy at Epcot, lots of Florida school field trip, I mean lots). That would have been a good day to go somewhere else.

As always your best bet is go go at opening and leave before noon. Sounds good but we also let DD12 and her friend swim late while we recovered in the hot tub, so it was hard to get them up in the am. We do breakfast in the room, so we have to get through that. MK really cleared out at night. Hollywood studios was a zoo on extra magic evening. You have to watch thou, MK did close at least once or twice at 7 for the Pirates and Princess parties. One guy I talked to on the bus thought Friday night would be busy since Saturday MK was closing early for the P and P party.

Lots and lots and lots of people from all over. I spoke to people from all over Europe, there were people from the east, Japan, Pakestan, Israel, etc. We even saw a group of Buddhist priests (which was interesting) and groups obviously from Moslem areas.

For Europe they had a week off for half term so that explained their numbers.

Boardwalk villas had a lot of open rooms. I was surprised how empty the place was. Made it more quiet for sure.

I think it is great you are continuing with your renovations. WDW will be there when you are done. Sometimes absence makes the heart grow fonder.
Anyway, you can live vicariously through our trip reports.

Hope I did not gush too much. I guess I really needed a vacation more than I realize. I thought it would be harder getting ready for it with being back at work after all these years home and the graduation festivities. It actually forced me to be more organized and I di more advance prep.

I am much more rested today, got some of the laundry caught up and the service guy is supposed to pay me a visit today.

Need to fly to work as well so I am off.

Thanks for being interested in my vacation trip. It is very fun to share, and I know you guys understand the addiction.

By the way, I really liked the owner's locker. That purple locker is full to the brim. It will make our Sept/Oct trip much easier since I left so much there.
That is a great concept.

 

[snappy]

Laurie, what beautiful photos! Love the snake in the grass (what exactly is it?) and the group photo in front of Splash especially (at least I think that's where you are??)! Could you speak about the crowd levels?

The waiter was kind enough to give me a menu to take home. Here is the description of snake in the grass. . . eel with shrimp tempura, avacado and cucumber. It was truly amazing. All three of us like it better than the crab and shrimp tempura rolls, although those were good. I tried to talk them into the Spicey Sensation that I had with Laura last fall but they did not take the bait so to speak.

Another thing to consider about choosing this time to visit WDW, we caught the tail end of the flower and garden festival at Epcot. . . it ended June 1.

The exhibits were extra nice this year, the Flower Power concerts were going strong (this is more interesting to those of us who were teens in the 60's), flowers were blooming everywhere.

I was surprised how much the kids got into the exhibits. DD's BF especially was into it as he obviously has a special interest since he has worked part time throughout the school year at a garden center for years that sells plants and installs koi ponds. He knows a lot about flora and fauna. He is actually starting work today full time with DS19 with a commercial electrical company our dear neighbors own working on huge projects at the LSU union and stadium. He will earn more for college there but I know he hated to leave the nursery. They just weren't giving him enough hours.

 

[laurabelle]

Laurie- I really enjoyed reading all about your trip and your pics! What a beautiful family!!! Yes, the Village Green was a preferred studio location. Your view probably can't be beat though! I tend to tour the same way, up early to hit the rides then laid back evenings. I don't want to sway you with your dinner plans, but in case you do end up at CA Grill on the 27th we are eating there early, 5:30. I have to eat around my usual 6:00 dinner time plus it's less crowded and I love the daylight view.

I'll add a little about the sushi. The Snake in the Grass has BBQ eel on top. It's really yummy, but I bet if the eel bothers anyone you could have the server ask the chef to leave it off. They have changed the Spicy Sensation a bit, we had it over spring break. The ingredients are the same, Scallops, Tuna, Avocado, but now it is lightly dipped in tempura and fried for just a minute so it is slightly crisp on the outside and she uses only a little bit of the spicy sauce on top. Still delicious even with the changes.

 

[snappy]

Laurie- I really enjoyed reading all about your trip and your pics! What a beautiful family!!! Yes, the Village Green was a preferred studio location. Your view probably can't be beat though! I tend to tour the same way, up early to hit the rides then laid back evenings. I don't want to sway you with your dinner plans, but in case you do end up at CA Grill on the 27th we are eating there early, 5:30. I have to eat around my usual 6:00 dinner time plus it's less crowded and I love the daylight view.

I'll add a little about the sushi. The Snake in the Grass has BBQ eel on top. It's really yummy, but I bet if the eel bothers anyone you could have the server ask the chef to leave it off. They have changed the Spicy Sensation a bit, we had it over spring break. The ingredients are the same, Scallops, Tuna, Avocado, but now it is lightly dipped in tempura and fried for just a minute so it is slightly crisp on the outside and she uses only a little bit of the spicy sauce on top. Still delicious even with the changes.

So you will be there on Saturday the 27th? I thought you were leaving early that morning? I guess you must be leaving Sunday morning?

 

[laurabelle]

Sorry for the confusion...I am planning on arriving at WDW on the morning of Sept 27 and going home on Sept 30.

 

[snappy]

Sorry for the confusion...I am planning on arriving at WDW on the morning of Sept 27 and going home on Sept 30.

That is good. We are arriving Sept 26, hubby to stay through the 30th maybe and me through Oct 6th for the race.

Long stay for me.

May not work.

My drier is fixed Yay!!!

 

[lookingforward]

Laurie, thanks for sharing the pictures! Beautiful family!

Yes....life can be a poopy sandwich! I loved that analagy, it made me laugh out loud. I appreciate all your heartfelt responses to my cancer hissy fit. I can be so emotional...still.

GAGWTA!

 

[jackskellingtonsgirl]

Mom's consult is finished. Her tumor is down to 2 cm from 3 cm. The surgeon is hopeful that they can get by with a lumpectomy. They have not scheduled her yet because they are going to do the D&C at the same time, so the OB/GYN & the surgeon have to coordinate.
I am not sure if I will be able to go up there or not, because the more they drag their feet the more complicated it will get for me to find someone to look after DS. Not to mention that airfare has doubled, and on short notice it will be even worse!
I told her my main concern is that my 16 year old sister will run her ragged, because doctors' orders mean nothing to my sister. My sister is selfish and wants things her own way no matter what. Mom said she might send her to visit our other sister, so we'll see.
Since we don't know about the lymph nodes we don't know what to expect in terms of chemo and/or radiation so we just keep waiting!

 

[snappy]

Waiting stinks but at least you now know the tumor is shrinking. Good news that a lumpectomy might suffice, especially considering she will also be having the Gyn surgery. I hope it turns out that way.

Do you have any influence over your 16 yo sister? Maybe someone needs to have an unemotional heart to heart with her. Maybe someone a bit removed would be preferable, neighbor, minister, etc.

 

[DeeCeeSW]

GAGWTA Sistas!

Love those WDW pics, Laurie. SOOOO JEALOUS! Maureen, I am sorry that radiation has been such a drag. The cruise sounds like a great idea, but you MUST do a couple of days at the parks so that we can meet!

Good thoughts go out to everyone here, and I am sorry that I have not been around much.

Tomorrow is the big day, TC treatment #1. I have to be at the office at 8:45am. and should be done by 12:30-1:00. My DH will stay with me for #1. I have all my "chemo stuff" ready, from Aleve to graham crackers and ginger ale, anti-nausea meds and steroids, the works. I'm ready to go.

Picking up my wig this weekend. It's a beauty, called "Codi" by Rene of Paris. Insurance is picking up the tab. Did I mention how much I LOVE Aetna?

Be well, please keep me in your thoughts. I know I have to do this, and even though I am scared about the side effects, I WILL make it through because I am a SURVIVOR!!!!

Love you ladies!

Dawn